Perthes' Disease in Children

One of my children suffered from Perthes Disease many years ago, and because of that experience I want to write and reassure any mother out there whose child is newly diagnosed that there is light at the end of the tunnel, and that your child will more than likely make a full recovery.

It is a long road, but a hopeful one, and while things are hard on your child now, being unable to run or jump or do what other children do, things will get better.

courtesy of perthes.org
courtesy of perthes.org

It is horrible for them at the time, not not being able to have a bath or wear attractive clothes, perhaps even having to switch schools because normal schools don't have disabled facilities. This is a major life-changing experience for them..

You will be so proud of the way your child accepts everything, and get on with their new life.

They have to get used to being in a wheelchair, to making new friends at school if they have to switch schools, and they have to get used to sitting on the sidelines when they play with their friends after school.


What is Perthes' Disease?

Perthes Disease occurs when the ball at the neck of the femur dissolves or breaks down. The ball normally sits inside the ball joint of the pelvis. When it breaks down, it moves out of position and so the child develops a limp,

All children with Perthes start off with a limp, and complain of vague aches and pains in the affected leg. This pain can be quite severe at times.

Signs and symptoms of Perthes.

  • leg pain
  • pain goes away at rest
  • returns with activity
  • no signs of bruising
  • the child has not previously had a fall or injury.
  • pain moves around, can be on thigh or calve.
  • does not clear up after a couple of weeks

If your child develops the above symptoms, take him or her to your doctor and ask them to rule this condition out.

While it is rare, the recovery rates and prognosis are much improved by early diagnosis and treatment.

A good consultant will explain in detail to you the worst possible outcome, which is that it does not fully heal, that your child will always have some level of disability and may indeed need a hip transplant before they are 30.

Please bear in mind that this is the worst possible scenario, and that with modern treatment and early diagnosis, the chance are your child will make a full recovery.

If your child is diagnosed with Perthes, your hospital consultant will explain to you exactly what your child is capable of doing.

With my child, they treated her initially with nothing more than advice not to run or jump, to weight-bear on the affected hip as little as possible, and then just wait and see how Mother Nature ran it's course.

Some children heal up on their own and never need any other treatment, but it takes a long time, 2 to 3 years.

courtesy of perthes.org.uk
courtesy of perthes.org.uk

Child Braces for Perthes

The Road to Recovery

The road to recovery is a long one.

After keeping an eye on your child for several months, when they feel the time is right they will put your child in what is called a broomstick plaster. This entails positioning the legs in such a position as to force the ball at the head of the femur deep into the hip joint socket.

They keep the legs in this position until the new bone on the head of the femur has grown. Both legs are put in plaster-cast with a bar running between the two to keep the femur head in position.

I see from several websites that in some children they only partially cover the 'good' leg with plaster, and run the separating bar at an angle. My child had both legs covered to the ankles.

Some children are put into a brace to restrict their leg movements.

Plaster or brace, once treatment is started, expect it to be in place for anything from 9 months to 2 years.

It will not be removed until the consultant sees from X-rays that the bone has regrown in the correct position.

So many children do end up disabled for life, as my consultant explained, because the ball of the femur, after breaking down, regrows.

If the femur is not fully repositioned 'home' in the ball joint when the regrowth occurs, it will regrow outside the ball joint and then it can't be put back where it should be.

When Perthes' goes undiagnosed, your limping child could stay a limping child forever. The bone breaks down, then it regrows, all with a 3 year period.

There are no other symptoms. Just a limp and a pain the child gets, in the affected leg. This pain can be severe, but goes away on resting the affected leg.

What to Look for in Your Child

Four times as many boys gets Perthes' than girls. It's only symptom is pain in the affected leg, on the thigh or occasionally lower down in the leg. The pain moves around so it is difficult for the child to pinpoint where the pain is.

It happens to children around 6 - 10 years old, but happens occasionally to younger or older children.

The younger the child is, the better the chance of recovery.

After puberty starts, the bone does not regrow.

The most important thing to help your child to recovery is early diagnosis.

If your child is limping without any obvious cause, ask your doctor for an X-ray to rule Perthes' out.

Clothing and Benefits

If your child is diagnosed as having Perthes' Disease, you may be entitled to extra health care benefits. Check with your local Health Care Department to find out.

Boy or girl, all their lower clothing is going to have to be altered. With their legs in this fixed wide apart position, they are not going to be able to put underwear on normally.

You can cut their underpants and rejoin them with velcro for easy fastening.

Girls can wear loose skirts,but boys will need their trousers altered in order for them to wear them. Again it is a case of taking scissors to them, opening then up and applying velcro or similar fastenings.

Travelling

I'm not talking about round the world trips, but even trips to the shops can be troublesome with your newly handicapped child, who needs to be in a wheelchair. Your car has to be big enough to accommodate one, though to be honest most children with Perthes' very soon adapt to their condition and can leap onto the back seat from their wheelchair, leaving you plenty of space to fold it up and put it in the boot.

You will be amazed at the agility your child shows despite the 'stookies' the hospital will put them in. They will be able to climb stairs, dance, hop in and out of cars and even walk a few steps in their own peculiar way while their legs are bound in an unnatural position.

Support

While Perthes' is rare, if your child is diagnosed with it, there is normally a support group available in your area.

Only 5.5 children per 100,000 develop this disease which is sometimes also known as Legg-Calve Perthes Disease, or sometimes just Calve Perthes Disease (avascular necrosis).

Some children recover from Perthes Disease only to get it again a short time later in the other leg.

This is rare but it does happen.

If your child is diagnosed with Perthes Disease, seek out an online support group.One such group in the UK is simply called the Perthes' Association and you can contact them by clicking on the hyperlink provided here.

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Comments 16 comments

Pamela Kinnaird W profile image

Pamela Kinnaird W 6 years ago from Maui and Arizona

I found your article to be very interesting. I had never heard of this disease. I'm going to tell my son-in-law about your article and see if he has learned about it. He is finishing up his last semester of a Registered Nurse program here on Maui.

I like your writing style.

Thanks for sharing your experience -- and that of your son -- with us.


IzzyM profile image

IzzyM 6 years ago from UK Author

I was a registered nurse and had never heard of it - that's how rare it is. He is only likely to have heard of it if he has come across it during his studies. But ask him anyway. The causes of this rare condition are unknown, but there is some suggestion of environmental impact as it tends of occur in geographical clusters.


jimmythejock profile image

jimmythejock 6 years ago from Scotland

Hi Izzy, My little brother was 5 years old when he was diagnosed with perthes disease and back in those days he had to stay in hospital for a whole year with his legs in Traction,i was only 7 at the time and didn't really understand what was going on but I went to visit him with my parents at least once a week, after a year he had to undergo physical therapy to learn how to walk again.

he is now a fully grown man and has had no problems related to the disease ever since, he even played soccer for the school team.....jimmy


IzzyM profile image

IzzyM 6 years ago from UK Author

Hmmmm...another Scot with it. Like cancer, there are clusters in Scotland. When I was nursing we had a disproportionate amount of cancer patients from Ayrshire (like every 2nd bed). I was startng to study the Perthes clusters in Scotland but this was pre-internet days and the info wasn't readily available - others who studied it a bit ( ie worked with it) described clusters - which nearly always have an environmental reason for occurring. The cancers in Ayrshire could have come from the nuclear power station in sellafield. (tidal action sweeps the debris northwards in the Irish Sea/Atlantic Ocean).

Glad to hear your brother made a full recovery :)

West central Scotland is a hotbed of old radioactive elements buried in the soil as a by-product of the old steelworks, ironworks and shipbuilding of the Clyde. Think of the Forge in Parkhead or the steelworks of Cambuslang. They have built new houses on land infilled with radium/caesium deposits. What were the workers exposed to when these works were open?

Hey I'd better shut up - this could be another hub LOL


jimmythejock profile image

jimmythejock 6 years ago from Scotland

I live in ayrshire and hunterston Power nuclear powerstation is only about 15 miles away, there is also the ICI chemicals and explosive factory around 3 miles away. they could be a factor, talking about clusters there were four or five other children from my town in the same hospital at the same time with Perthes disease and one of them was in my brothers class at school.....jimmy


IzzyM profile image

IzzyM 6 years ago from UK Author

Ahhh...hunterston. Yup think that place is repsonsible for a lot of 'enfermos'. Thanks for that info about the clusters. Consider 5.5 in 100,000 get it, and there were half a dozen kids in an area with a population of what...40,000?

Def something wrong there! A friend's kid from the Linwood area developed bilateral perthes after my kid was recovered - so only about 15 years ago. Linwood - old car making industry area. What is the in the ground or the air there?

Do you know I never ever saw an article in print about the high incidence of cancers in Ayrshire? I guess someone wanted it kept quiet, but I have no reason to believe it is any different today.

Would make for interesting research - both the perthes and cancers. Job for you because you would have to ask friends and neghbours unless someone has already covered the subject online.


Phil C 6 years ago

I was diagnosed with perthes @ 3 yrs of age in 1951. I had surgery, was put in the "frog" casts with the bar. when I was 6 or 7 I was put into traction braces for two years. = had both hips replaced @ age 28. Recovery was good. I was playing racketball until my ortho doc said I had lost my mind. He compaired my nut hips, which were vurtually pain free were like a set of tires with only so may miles on them so slow down. Four years later (1980) my right hip was revised (redone) I had wore it out and it was loosening. there were some complication and they have to implant a very long femur prosetic and suppliment my own bone with cadavor bone. When I was 43 (1991) my left one was revised. that was the last oeration so far. I am 62 years old, still limping a little but walking with no aids. I don't jump off off stairs or run to catch a bus. I do my best to consurve the mile on my tires. of all the medical condits I could has been 'stricken' with I can say I'm good. and consider my self blessed. Thank you for allowing me to add a few comments. phil.chatelain@yahoo.com


IzzyM profile image

IzzyM 6 years ago from UK Author

Phil, thank YOU for reading and taking the time to comment. You sound as if you'd a rough old time of it and would have come under what the consultant described as 'worst case scenario'.

Glad to hear you are still mobile. If it's any consolation I don't jump off stairs or run for buses either due to an accident I had in my adult life, and not many people our age can anyway!

Thanks again for sharing :)


Dale Mazurek profile image

Dale Mazurek 6 years ago from Canada

Hi IzzyM. Another great hub. This is something I had never heard of before and I am sure many others have.

I am very happy to put this hub up on my blog

Cheers

Dale


IzzyM profile image

IzzyM 6 years ago from UK Author

Thanks Dale, and you're welcome :)

As you can see from the comments above, it is affected more people than we might have realised.


Smiffy'slass 6 years ago

Hiya all, My son is 5 he was diagnoised in november 2009 with perthes disease in the right hip so far he has been put in traction twice for 2 weeks at a time attends hydro therapy and get's intense physio therapy 3 times a day he is also in a wheelchair not allowed to weight bare at all but yet his dr feels that surgery might be the better option as he keep's stiffening up and losing movement in his hip it is amazing how kids adapt to a new life he started school in the august like every other kid walking into his class waving goodbye and running about playing with friends i alway's noticed he ran with a limp and he would often wake in the night with pain in his knee we were mis-diagnoised twice and told it was growing pains but as a mother you no your child and kids dont grow up one side at a time so we changed doctor and got x rays done he was then diagnoised with the disease which we had never heard about we tried looking up sites on line but it never gives you the information needed or what you want i like to be a step ahead and know what's coming to my boy does anyone have any information on what might happen next and how recovery from perthes will affect his later life i like all aspects as everyone is different i like to be brave for my little angel

thanks

Meshell


IzzyM profile image

IzzyM 6 years ago from UK Author

Your son is very young, and the younger the child the better the complete recovery rate. I am sorry to hear he was misdiagnosed at first. Listen to your surgeon. Surgery sometimes is the best option for long term health. I'm sure he'll make a complete recovery just like my little girl did :)


Smiffy'slass 6 years ago

I had heard the younger they are the better out come once the disease has become in-active i can't wait to see him get back to running about causing havoc with his wee pal's at least he is young enough yet to try forget but it sure does come with up's and down's it's like a rollercoaster of emotion's one appointment he is doing great next appointment he has stiffened back up and away back to hospital he see's his surgeon in july so i hope it all goes well. it's people like yourself who make the difference as you stated there is not a lot of articals about it and the ones that are there state the same thing's it's nice to see a happy ending i hope our's is the same :-)x


IzzyM profile image

IzzyM 6 years ago from UK Author

I hope so too smiffy'slass and there is every chance your little lad will make a full recovery. Sending all my best wishes to you and him :)x


Erin 6 years ago

Thank you for this article. I found out yesterday that my son (diagnosed with Perthes in May of this year) will need two surgeries in the near future and will spend 12 weeks in a cast covering both legs with that dreaded bar in between.

I know NOTHING about this disease - am just learning, and finding it very interesting and intimidating at the same time. I want the best for my son, and would love someone to talk to who has gone through this experience.

If anyone wants to email me and share stories, I'd love to hear from you. ErinCastrucci@yahoo.com

Thank you!


PJ Taylor 5 years ago

I am familiar as I encountered this disease as @ 9 years old. my e mail is pam_taylor1@comcast.net if any information is needed to reassure worries. Good thing God made our minds to control our bodies. Knowledge is essential in overcoming any disease or hurdle. PJ Taylor

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